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RS, it's good to hear from you even if you don't have and new to add. It's good for you to know that you and Butch are being held tight in absentee and are in our thoughts and prayers.

I'm also sorry about your BIL. I hope the lymph nodes come out clean. Mark had 1 node that was bad, but is still here after 15 years. Lots of problems, but I still have him.

Isn't it amazing how we love our spouses more even though life has changed so much and we are helpless to do anything but be there?

Take good care of yourself RS and then you will be able to hold Butch's hand even tighter when needed.
Love you girl,

Sammie

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

The appointment last week at the VA started the round of bi-weekly visits we'll have to make. The oncologist ordered a two week supply of the chemo drugs from the pharmacy for dh. Due to cost, the VA does them in two week increments, so we get to slog back down the road twice a month for the next six weeks. Once this series is done (medication every day) then another round for at least the next six months when he will go on a five days on, 23 days off, routine.

During the appointment, the doctor was quite disturbed that the VA head honchos had not yet authorized my husband's radiation treatment to be done locally so he phoned two of the head honchos to get them to expedite it. Finally today we got the word from the nurse at the radiation oncology center. She has spent a lot of time on the phone since our initial visit trying to get the okay and is tickled he can finally start.

So, tomorrow we haul butt to get dh's head mapped. Still not sure when the actual radiation therapy will begin, but we'll be ready.

In between the last appointment and today's phone call, we had to go several rounds with three different doctors to get a refill on dh's Valium. Why, I have no clue. The prescribing physician couldn't do it since the VA is now involved. The oncologist at the VA couldn't do it (?) so that left dh's primary care physician at our local VA clinic. He couldn't phone it in because it's a controlled substance, but he could fax it. Very strange situation.

What is amazing about Valium is how fast it halts a seizure. Dh gets a weird sensation in the left side of his mouth as a warning and even if the seizure has started, within seconds of taking the meds, it stops.

With the rainy, gloomy weather we had over the weekend, both of us were in a bad place. There was a bit of light, though, as my sister, her daughter and her granddaughter came to visit Sunday evening. My niece loved Abby (yellow Lab) and spent a bit of time playing with her. Even though niece is only 8, she wasn't afraid of Abby's size and the two of them had a ball running and playing with Abby's Frisbee. And Abby, unlike most kids, brings her toy (said Frisbee) inside at the end of the day, which just cracks us both up.

Thanks again for all your well-wishes, prayers, good thoughts, etc. It means a lot to both of us.

Oh RS,I hate the run around that you have to go through to get what is needed. I am pleased they finally are working to get the radiation started. Do you think they are only ordering the chemo for a 2 week period so that the oncologist at the VA clinic can see him? It does sound like a stressful time in trying to get DRs to work together whether it's the VA or not. I don't know. It just upset me reading your post. You are trying to get treatment to save a life and you shouldn't have to jump through hoops to get what is desperately needed.

Since when is Valium not able to be called in? Is that a VA or State law thing? We have to have some RXs picked up but Valium can be called in here. I know because Mark has to take it.

Life becomes so different when our loved ones or ourselves now face cancer treatment. Priorities change and we come to know what is really important. It's what we think about 24 hours a day. It becomes the most important thing in our lives to get treatment easily and hope that when it starts that it will work.

I think about you two every day and I do understand how frustrating all the medical crap one has to go through. I don't understand the VA though as we went through our local University hospital. Fortunately we only had to drive 15 miles and can't imagine your road trips.

Demand that Butch's Valium be faxed in on a timely basis every month even if it takes repeated phone calls. I am pleased that one DR took up your cause to got things going.

Keep us updated and try to feel the love that we have for you both.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

I didn't understand why he couldn't call it in to a local pharmacy either, but it was okay to fax it. Whatever! The doctor did order a full prescription from the VA distributor which will come through the mail. Today he simply ordered a smaller amount to hold dh until the full script arrives.

The good news is that the radiation oncologist has been pushing the VA (and his nurse) to get an answer from the VA. The thought of dh having to go to DC for six weeks was awful! With so little time left (according to prognosis), I don't want us to spend any time apart and neither does he. With only SS coming in, there is no way we could financially afford to board Abby or the cats for six weeks plus put me up in a hotel/motel for that long plus pay our regular bills. While we have some money stashed, it would never cover all those costs plus pay residual medical bills and household bills. The preceding is why people say, "no one can afford a brain tumor."

Yes, life has become quite different since the diagnosis. We do a lot more kissing and hugging!

You'll love this, Sammie. Dh has always said everything he knows about romancing a woman he learned from Pepé Le Pew. When his first seizure, the one that landed him in the ER, was slowing down and he was able to speak again, he grabbed my hand, kissed it, then left a trail of kisses up my arm. When he reached my elbow, he looked up at me and told me he had been so afraid he'd never see me again. This was before the diagnosis, of course, so we kind of laughed about him being melodramatic. We know better now so we don't pass up an opportunity to cuddle, hug or kiss. (Our kids would probably barf if they read this.)

Back to the Valium--the doctors have been working together to get dh the meds he needs. The radiation/oncologist can write the order, send it to the VA doctor and the VA doctor can then send the order on to the pharmacy. It works, just a bit slower than usual. If they would simply put refills on the dang script there would be no problem.

No, I don't think the two week thing is so the VA doc can see him. He explained it is due to the cost (somewhere between $250 and 400 per pill). Because of the high cost, they don't normally keep a large quantity on hand. Each patient's prescription has to be special ordered.

I think about you two daily, Sammie, and hope I have as much courage as you have shown.

When I had my surgery last August, DH said something about how getting the percocet was complicated, the doctor couldn't just call it in, even though he was in that hospital in surgery. The other Rx's no problem.

I guess the rules got strict about these things, along with our cold medicines!

I am so sorry to hear about your husband. An employee where I work is fighting the same type of cancer right now. I will keep you in my prayers.

Where are you located? Penn State Hershey Medical Center in Hershey Pennsylvania is currently doing a clinical trial for a new type of treatment for glioblastoma. The doctor's name is Dr. Glantz. I don't know if it is too late to be part of it but the phone number at Hershey is 717-533-8521.

Quote:

Originally Posted by Rainsong

is the one you don't see coming. Mike Mansfield

On March 27, my husband was found in the parking lot of our local Martin’s grocery by two health department employees suffering from a seizure. They immediately called an ambulance, then used his cell phone (which he was attempting to use when the seizure occurred) to hit “redial” and notified me.

At first the doctors weren't sure what was going on but they thought either a reaction to his meds (not likely since nothing has changed and there are no new meds) or he had a stroke.

His speech was garbled, he had difficulty using his left arm and he was
having seizures.

The only thing I knew for sure was we were both scared.

During the four hours I was at the hospital (came home to take care of Abby, our pup, and get a bite to eat while he had his CT scan since I could not accompany him), he did regain some use of his left arm and I was able to understand some of what he was saying. He also had regained his sense of humor--he asked me to bring Abby back to hospital with me.

The CAT scan came back negative for stroke, so they performed an MRI.

The MRI showed a 3/4" diameter tumor on the right parietal lobe. Full body X-rays show he has no other tumors in his body so this was considered a primary site. The neurosurgeon said the tumor was close to the surface and relatively small.

Surgery was on Monday, April 2, after which a section was sent to pathology to determine whether or not it is cancer. Hubby came through the surgery fine, except for an infection from his IV, but we won't know whether the tumor is malignant or benign for a few days yet.

He's still keeping his sense of humor, so that's good.

So far it doesn't look like any lasting damage to his brain or body functions. No sagging face muscles, no limitation on his limb movements. Still, I felt like I had been holding my breath for over a week.

April 10
At the neurosurgeon appointment the staples were removed. Then the doctor dropped the bomb that sucked all the air out of the room. My husband has been diagnosed with glioblastoma multiforme, an aggressive brain cancer--the same kind that killed Teddy Kennedy. Prognosis is not good but we are not giving up hope. There are some people who have survived 10 or more years with this type of cancer. Most die within two years and many in a lot less time. While the neurosurgeon was able to remove all of the body of the tumor, glioblastoma has microscopic tendrils which are impossible to surgically remove as to do so would cause more damage to the brain. Neither radiation or chemo are very effective but sometimes they do work for this type of cancer.

Radiation oncology appointment is set for April 23. This had to be postponed as my husband suffered another seizure the same day and was sedated at time of appointment. He had a few short seizures over the weekend culminating in the wallapalooza on Monday.

We did get to see the radiation oncologist on Wednesday (25th). He is coordinating with the oncologist at the VA in our area so the treatments will be covered by the VA. Since the treatments have to be given on a daily basis and the nearest VA hospital is over 70 miles away, there is no way we can do the trip each day.

And, because of the IV meds on Monday, his arm became infected (for the second time) which meant we ended up at the local VA clinic for antibiotics. The radiation oncologist also gave him an additional med to take when he felt a seizure coming, one that works faster than the regular anti-seizure meds he was prescribed after surgery. His neurologist also increased the dosage for the anti-seizure meds so hopefully those will be under control.

We've had our wills, Power of Attorney and Advance Directives drawn up and now have to make an appointment to have them signed and recorded.

Monday (April 30) we go to see his neurologist and on Wednesday, we have to make a trip to the VA hospital so their doctor can give the okay for all additional treatments can be performed locally.

I know there is no cure but damn, this feet-dragging bit made me feel awful. Like, wouldn't he have a better chance the sooner they got started?

Then again, nothing has changed in forty-some years of treatment. They still do the "slash, burn, kill" crap with little to no improvement in prognosis.

There are some patients who swear by chemical cocktails rather than one chemo medication. Others swear by hemp oil and still others swear by diet, or marijuana. Very few who have advocated for these various treatments are still alive. And doctors who swear by their own concoction/treatment methods, seem to be selling something.

In September we'll have been married 34 years. I really, REALLY would have liked to have had at least another ten years. Oh hell, what I'd really like to have is another 34.

I am so glad Butch was approved finally for treatment. I think in 50 years, they are going to look back and think that cancer was treated in such an archaic way. We kill our good and BAD cells in hopes of surviving another year or another 20. It's a crap shoot for sure but one that we take in the hopes that we do have another anniversary. Mark should have died 15 years ago but he didn't. Lot of problems since but he survived.

I honestly hope and Pray (yes pray) that Butch will be one of the survivors and you will have many more years together. I know what you mean by different people having different cures. Shoot, just give him the one that works. I have (had) a friend who is still trying to get me to buy nutrition products from her to "cure" my breast cancer. Give me a break.

There are times that we have to put every bit of hope and faith in our DRs that they know what they are doing even if it is the same treatment from 50 years ago. My cancer is triple negative which was bad so I can't get the new chemos and pills. Just the standard old stuff. I truly believe it is working.

RS, you are a very strong person and I think that your energy and knowledge will help you BOTH through this. Take care and keep us informed
.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

I read this whole thread with tears streaming down my face. I'm so sorry your husband is ill. I'm sending positive thoughts your way that the doctors will be able to help him. Take some time for yourself in all this so you can stay strong for him. Sometimes people don't realize how debilitating an illness can be on the caretakers as well. ((hugs))

I did a search on ECC today looking for Sammie's original breast cancer thread. At least, I think there was one prior to the current one, but I couldn't find it.

Sammie, you and I had a nice exchange on that thread. Hugs to you and Mark!

Rainsong

Rainsong, the thread is still there. Just do a search for "Samantha breast cancer" and you will see Mark's post # 1 on the thread.

How is it going for you two? I hope the radiation goes well. Keep us posted when you can.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

Sammie, I didn't look for the thread today. I didn't get a lot of sleep last night (went to sleep around 2:30 and woke at 6:30). Today's appointment went well as far as I know. Since they were taking pictures (X-ray, CT scan--no clue) I wasn't permitted to go back with Dh.

Radiation starts tomorrow--along with the Temodar. I am NOT looking forward to the possible side effects. Dh gets nauseous on boats, fair rides, if he tries to read in a car, or when he sees me getting a broken bone set. Considering he's going to be ingesting toxins, this could get a bit hairy. Hopefully by taking it at bedtime, he'll sleep through the worst part.

We had to rearrange a bunch of appointments today due to the scheduling of the radiation therapy and a too-close appointment at the VA hospital. We already had an appt. on the 31st for blood work, Rx refill, neurologist and oncologist but they had also scheduled another appt. for June 4th. We clocked it last time. Took a little over an hour and forty-five minutes--87.5 miles one way.

And Abby will be going with us for the RT on the 6th. Dh will go in for his treatment while I stay in the car with her. She's scheduled that morning to get spayed. His appt. is for 9:15 and her drop-off time is 9:30-10. Not quite enough time to get from the cancer center, back home to pick her up, then back down the road to the vet's office. Sheesh. That should be an interesting week.

We applied for RR disability by phone today. Interesting process...hmmm.
Lady says they need original birth certificates. I haven't seen mine in decades and have no clue where it is. So I asked if a copy was okay. No, gotta be the original. What? A copy from the Bureau of Vital Statistics isn't' acceptable? Oh--oh, yes! Of course it is!

Can you see me roll my eyes?

I have a pile of thank you notes to finish, dishes still in the sink (I did half) and am too pooped to finish tonight.

rs, wish I was there to do your dishes for you. I will be praying for you and hubby all day tomorrow. I am so sorry this is your life right now. Praying for a miracle.
I read your comments on the thread about what our husband does that bugs us. I loved all your comments. I too dread the thought of not having my awesome man at my side. In September it will be 41 years. They have been good together.
I am praying for another 34 for you!

rs, wish I was there to do your dishes for you. I will be praying for you and hubby all day tomorrow. I am so sorry this is your life right now. Praying for a miracle.
I read your comments on the thread about what our husband does that bugs us. I loved all your comments. I too dread the thought of not having my awesome man at my side. In September it will be 41 years. They have been good together.
I am praying for another 34 for you!

I wish you were here to do the dishes, too! LOL!

Treatment went as expected--as if nothing happened. Side effects will take a while to show up. Dh is a bit worried about his reaction to the chemo drugs. So far he has three different pill organizers to keep his medications straight. He did have two, but decided he needed another one just for the chemo meds. Today he said, "Maybe I should wash it out before I use it." To which I replied, "You're putting poison into it and you think you need to wash it?"

Does Butch have strong anti-nausea meds on hand? I know all chemos are different but the side affects to increase as the time goes by. Hopefully he will do OK with radiation but the chemo is another matter all together. I don't know that he can sleep through it as with me it would come in waves at different times. The anti-nausea meds helped a lot. They made me tired, but so what. My friend, who has brain cancer takes Temodar and she gets very tired and does have some nausea. But everyone reacts differently.

Can you use a State Certified Birth Certificate that they will put the embossed state seal on it. I would think that this should be legal for any purpose. A lot of people don't have the originals.

I wish you lived closer for treatments and DR appts. Please take care of yourself too. The stress of being a caregiver can take its toll. If Butch takes a nap, try to take one too. Eat well even if Butch can't eat much.

Lots of hugs and love.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

Does Butch have strong anti-nausea meds on hand? I know all chemos are different but the side affects to increase as the time goes by. Hopefully he will do OK with radiation but the chemo is another matter all together. I don't know that he can sleep through it as with me it would come in waves at different times. The anti-nausea meds helped a lot. They made me tired, but so what. My friend, who has brain cancer takes Temodar and she gets very tired and does have some nausea. But everyone reacts differently.

Can you use a State Certified Birth Certificate that they will put the embossed state seal on it. I would think that this should be legal for any purpose. A lot of people don't have the originals.

I wish you lived closer for treatments and DR appts. Please take care of yourself too. The stress of being a caregiver can take its toll. If Butch takes a nap, try to take one too. Eat well even if Butch can't eat much.

Lots of hugs and love.

Sammie, this whole process with the doctor is quite interesting. He only gives the information he knows we need when we need it. In other words, no mention of nausea meds yet.

Let me illustrate this for you. Starting yesterday, each Tuesday we will meet with the doctor after the treatment in order to cover additional information and to have any questions answered.

At yesterday's meeting, he mentioned that with hubby's tumor having been so close to the surface, he may experience more radiation skin burn than most people. As a result, it is recommended he use baby shampoo as it is less irritating. So far, no skin damage. I already knew about the shampoo--yeah--I research a lot. The doctor had not mentioned this at our previous consults. If necessary, he's to use a cortisone cream on any irritated skin and he is always to wear a hat if he's outside long--something he has always done.

Doctor has mentioned the nausea should be significantly less since dh is taking the meds at bedtime. So far, hubby has only had a slight hint of nausea. It goes away when he eats something. Even though the doctor hasn't mentioned the acceleration of the nausea, I have told hubby what to expect. While he has been doing some research on his own, I don't know if he's gone into the side effects of chemo beyond discovering it can cause constipation. Yep, now he's worried about the other end!

Tomorrow is the long day--treatment in the morning, run home to grab bite to eat, dash off down the road to VA in Martinsburg, long string of various appts. then the slog back home, hopefully in time to let Abby out before any accidents occur.

Hubby is working diligently to get the remaining fence section up for Abby. Two sections of fence and three gates to go. He's fencing in quite a large area, mostly with utility fencing (it fades into the field and the woods) but the area around the house is the white vinyl picket stuff. My sister found some at a garage sale two years ago and insisted I buy it. At the time, I was a bit ticked that she insisted so strenuously but now I'm glad. Each section runs $45 at Lowe's and I got five sections at the garage sale for $25!

The most difficult part for hubby is digging the fence post holes. Hard-packed clay beneath a thin layer of topsoil. What would have taken him a few hours before he became ill now takes two days. After the first day, I told him to water the hole and let it sit overnight. He thought I was crazy but it works! Hopefully he will be done (and yes, I'm helping when I can) next week and Abby will be off her run to chase her Frisbee to her heart's content. Uhm, the cats will be soooo surprised! Right now they know the limits of Abby's run and manage to stay clear by a few feet.

This weekend we plan to take Abby to the lake up the road. Her first foray in swimming. The weather is supposed to be beautiful so this should be a fun outing.

Thanks for all the well-wishes and good thoughts.

I want to write another post about clinical trials since StmpSusan mentioned the one in Hershey. Interesting stuff I've found out about clinical trials. Might be of interest to others since all clinical trials go through similar procedures.

GRRRRRR...............Demand a nausea RX. If you need it you will have it at hand. Mark and I both were questioning everything along the way as to what to expect in the future even if it was speculative. We all can easily Google to find out info but it is really the DRs job to fully inform us of everything before it happens. I use the same oncologist and like his honesty....sometimes he scares me a lot but at least I know where I stand.

Burns can be nasty with radiation to tumors close to the skin. It's like a terrible blistered sun burn. Again having a salve or a RX cream ahead of this is important.

Mark was in a clinical trial. I would very much like to hear what you want to write about it. I will be watching for it.

Hoping for the best for Butch and you as you go on this very scary and exhausting journey. I think of you daily. Take care my friend.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

I'll write up the stuff I learned about clinical trials this weekend. Way too pooped tonight as the appointments took longer than normal and the wait at the pharmacy was extremely long--made us much later getting home.

The doctor talked to us about the nausea today. If there is any problem, he'll call in a prescription immediately. So far, dh hasn't had any "true" nausea, just hints of it and it goes away as soon as he eats.

Since dh has only had one week of radiation, we still have at least another week to go before anything severe happens and I know what to get, so we will be prepared. We already have the baby shampoo as the hospital provided three bottles when he in for his surgery.

Don't be upset over dh's doctors. They really have gone out of their way to help in any way they can. The VA neurologist was concerned dh was still having mild seizures and depending on the Valium to stop them. He added Clonazepam to dh's meds today as he did not want to increase the Keppra.

Because dh is now seeing the VA neurologist, we will cancel future appointment with the local neurologist even though we like him very much. The VA neurologist was extremely surprised that dh had the neurosurgery here rather than in Baltimore or Bethesda but also pleased they were able to resect 100% of the tumor (except for the microscopic threads). Evidently he didn't realize we have neurosurgeons here! In fact, his reaction and his comment on the size of dh's tumor (he called it "very small") kind of gave us both some hope that dh will beat the odds.

Okay--really pooped now. Will try to get to the clinical trials tomorrow or Sat.

RS,
I am really glad and relieved you like the DRs and hope has been given to Butch. Hope is one of the most important things to have when you are going through all the treatments. Remember there are many, many friends who are hoping, praying and sending you both cyber hugs. Try to get as much rest as you can - when you can.
Love and Hugs.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe

Rainsong, Praying a lot and so happy to hear the latest about what the doctor had to say about the tumor.
I check in every day just to see if there are updates. You are so faithful in keeping us posted. I am praying for you too. Take care of yourself. This can be so hard on the caregivers.

SO glad to hear the news from VA neurologist, and glad to hear the side effects haven't been too bad yet.

I love your watering idea before digging the post holes. I hope Abby's first swim goes well. It's lovely to read a post with so much outdoors and running cats and Abby in it. I can feel your joy in that, and joy in your time with DH. Your home and land sound so rooted in love, and so completely green and vibrant with its growth. The doctors will do everything they can, but there's no substitute for that love and its rooted, contented home all around both of you. I hope things continue to go well. Sending love, prayers and warmest thoughts to both of you.

__________________JaneGod sent angels down to earth in the form of dogs with notes saying 'don't judge, just love.' They ate the notes but keep trying to deliver the message.

I just found this thread! I haven't been on in a long time. I'm SO sorry to hear this Rainsong, and I just don't know what else to say. I'll be thinking of you and your husband, though. ((hugs)) to you both! I'll be watching for updates!

I just stumbled on this thread and I cannot tell you how sorry I am. I know words are nowhere near adequate at this time, so just know your family is in my thoughts. I am sending a big bear hug your way.

Sharon

__________________There is nothing so simple that I can't complicate it.

RS, How are things going with Butch's treatment? Thinking of you both often.

__________________
Sammie # 7651

When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe